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Restless Legs Syndrome
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Premepixole has ruined my life

Hello everyone. Ive been on premipexole for over 10 years. I am on the max dose. Sometimes i get relief. Ive tried roprinol (didnt work) chlozepham i had a really bad reaction to it. Im a driving instructor so i cant take tramadol. Im going to try the oil from cannibis next.

I have all the side effects from premipexole. I am in an iva now because of gambling, i sleep 2 hr breaks at night, im impulsive, ive lost my 7 year relationship because of mood swings. I have become very depressed and then im hyper and off rhe rails. I get so tired during the day, put on 1 1/2 stone etc.

I was put under the crisis team for 72 hr care assessment last weekend by my gp. I never been like this in my life, never wven bought a lottery ticket. Every thing went wrong wen i was put on max dose 5 x .088mg i have 3 night flare ups where i cant sit lie down, you all know the score

It goes into my arm and now my wrist.

I cant do my job and its killing my buisness and im self employed.

Saw a physchatrist thurs and its been confirmed its 100% the tablets fault. He wants me off them immediately.

I have an emergengy app with the neurology next week. Ive seen him before but he was useless just saying theres no other mefication i can take

I have type 1 diabetes which is controlled and an underactive thyroid after having radiation drink after my thyroid grew back after 7/8 of it being took out

Im basically at the lowest of my life and i dont know what to expect. I dont know what i can do. Please can someone help or give me advice. Im 48 next week and feel as tho i will be lucky to reach it.

Ive tried coming of premipexole several times but i cant handle it. I get no release from RLS and i literally have no sleep. I wslk around the house and i cant sit so stood for 3 whole nights and days, until i cant take anymore. My gp has nevef reviewed my medication and cant even perscribe strong sleeping tablets because of my diabetes.

Sorry for the long message but i want my life back

I

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I got tears just reading this. You are definitely in a crisis here, and I for one want to do everything I can to help.

Others will be by to address the compulsive behavior and it being the fault of the pills (I definitely understand that, btw), but in the meantime can I suggest something? Please, please, please confide in someone. I would take your exact words and repeat them to someone (preferrably a neutral party like a therapist). I would even take it a step further and take your words to ALL doctors you see as well. You said you have an emergency neurology session next week. That’s great, but I’m sorry he’s useless. That being said, it would be criminal for him not to take immediate action (medical or ANY FORM) after reading this. You need to do this ASAP.

Next week is coming up quickly. You will make it to your birthday (happy early birthday!) and beyond.

My suggestion for this weekend:

You should not be alone (physically). If you are alone where you live, can you change that? Is there a friend you can go stay with? If not, every place has a crisis hotline. Could you call that? Or maybe go to the emergency room if only just to sit there?

Do you have things that you enjoy doing? Do you like to go swimming, go for walks, golfing, etc.? Whatever it is, please have someone with you.

If you take the route of staying with a friend, would it be possible to stay there until your appt.?

Please keep in frequent touch so we can see that you’re okay. I will be following this post (as I’m sure others will do), which means that we will be notified every time someone (including you) responds.

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I agree with everything Jess has said - you need to confide in someone, ideally someone close to you.

In the meantime you are clearly struggling with augmentation on the pramipexole and that has to be dealt with urgently - you won't feel better until you have that under control. For this you need tramadol (I know you said you couldn't take it because of your job but you are hardly functioning in your job at the moment anyway). You need the neurologist to prescribe this to help you reduce the pramipexole and you will need to do this slowly. You may feel worse before you get better (I've been through it). It's very hard but you can come out the other side and there are other drugs you can then try - just not another dopamine drug.

Search for augmentation on here - you are certainly not alone and read the link below.

rls-uk.org/augmentation-reb...

It may all feel impossible at the moment but tackle one thing at a time and first I would tackle coming off this drug and then the rest will follow.

Remember - one day at a time.

Good luck, Pam

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Thank u soo much. Close friends know and my two adult children are home until next week. Im just hiding in my room as i dont want them to see me like this. The local crisis team left a message for me to phone them. I think i give the psychiatrist a run for his money too yesterday so they just keeping an eye on me. Thank you soo much for the advice and support. I really appreciate it xxx

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Well keep in touch and let us know what happens. You need to get off this drug and you will be able to get your life in order. It sounds like you have the support of your two children - don't hide from them, that will only make them worry more. Go down and make the most of their company and take whatever help you can get, but get off that drug!!!

Pam

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Having someone with you is number one right now, so I’m really glad to hear that your kids are home! Even if they don’t see you, your gesture of hiding in your room will let them know that something is wrong. They will not let their father slip through the cracks!

I’m also glad that you have the hotline «on call»!

Much easier said than done, but try and have a good weekend! Happy birthday!

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Banjo, all the replies to you are spot on. I just returned from a major visit to Johns Hopkins Hospital for, what I thought was treatment. The doctor was very dismissive, did not hear anything I said, did not look at the pages of questions I was told to fill out, yup...a major waste of time. I am 77 years old and I too, have never been in this state before, although have had WED since I was 19 years young. Back then it was no big deal and I could handle the sporadic attacks. Now, like you, pervasive and invasive 24/7 in my life.

You are not alone. One of the forum members suggested activity for you. I do hours of leg exercises on the bed while watching TV. This helps in that I am controlling the wiggles, not my legs controlling me or my arms also. I have augmented on every drug mentioned and more. My pancreatic enzymes went sky high from the Gabapentin and my heart went nuts from the requip. I have been in emergency room for same a few times. A few weeks ago I decided to do something other than scream and cry during one of the many all nighters. It was hard to do because I am so over the top tired but I started cleaning and straightening drawers. I can not sit long enough to use the computer. For the time being I am on methadone which does not seem to help but not having side effects. Up until two nights ago I was taking a cannibus tincture with the methadone. All the cannabis did was cause hallucinations. I will try cannibus again with a high CBD and a negligible THC As a young person I never did any recreational or otherwise drugs. Methadone, which actually now is being prescribed, is a filler for me. I stopped taking cannabis because my husband and I thought it may be 'cancelling' the methadone. So night #2 on just methadone. Maybe it will help but difficult to know what is helping as I am also working with a energy therapist. I also am taking DAC (look it up) You are not crazy but do your own research, have someone with you at the doctor visits, take notes, print out new information you may find, let doctors know he is part of your team and the doctor is NOT a healer. Most doctors are just pill pushers, sometimes that is OK. I am after the cause of WED, not wanting to just treat the symptoms. Like all the other responders to you post, keep in touch, stay involved. This is so scary and overwhelming with all the conflicting advise. Be your own best researcher. Unless you have a doctor who actually has the same disease with the same symptoms, they don't get it even if they think they do. This is why I have changed my language communication and call the disease by the formal name 'Willis-Eikbon Disease" i.e., WED, instead of RLS. Now one really understands why legs that are disruptive also controls your life. Stay tuned and watch my posting as I am searching the alternative, do no harm, route. Sioux (auntiesioux)

PS it is 2 am and I am still awake but my legs are still and comfortable so I can use the computer. Will see what happens when I go to bed. For now I am just on the DAC and methadone.

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hi, :) We are ALL after the cause, but quality of life counts while we are looking. 28 yrs ago was when I started my RLS quest, when I found out what it was that was driving me crazy. 28 yrs later and many groups and lots of research, we are getting a few more answers, for one that are genes connected to 70% of RLS cases. That was a major thing. My entire family has it, sisters, nieces, nephew, aunts, deceased father. My mother has very mild RLS, compared to the rest of us, lucky woman. RLS is the driving force in my life. WED is only a "also known as name". They tried to change the name in the US, no one else was doing it, and legally for a few reasons, the US RLS Foundation had to legally do business as the latter name, copyright issues. :) WED has such a long explanation, too, but so does RLS, I guess.

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Thank u soo much. What do u have tho to get rid of it tho wen you get off premipexole

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Ditto everything Pam and Jess say. You need to take 2-3 weeks off work and get your neurologist on board to help you get off pramipexole and through withdrawal. You will need tramadol or OxyContin and sleeping pills and get your GP to take bloods- serum ferritin needs to be above 100.

You also need to discuss which meds will be suitable once through withdrawal- a combination of low dose opioid and pregabalin work well but your thyroid and diabetes doctor will need to confirm any interactions.

You can’t carry on taking The pramipexole.

I really feel for you - Augmentation and withdrawal are dreadful but with time off work and the help of family, friends and your GP you CAN get off pramipexole.

We are all wishing you strength.

Take care

Jools

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Why are you hiding for your children? People can deal with much more than you think and it may strengthen your bond if you share your current situation with them. It will give them the opportunity to help and support you - and, boy, you will need that in the days to come.

On a different note, I know tramadol and other opioids may interfere with your reaction ability, thus may interfere with your driving. But is doesn’t HAVE to. It didn’t and doesn’t for me. You’ll just have to give it some time - a day or two to find out - and see how these meds affect you. I second Pam that given your current state your driving may not be completely safe either (and that is an understatement?!). If it is indeed augmentation - earlier onset of symptoms, spreading to other body parts, and a few other aspects that elude me at the moment ( I see Pam posted a link with info) - an opioid like tramadol or oxycodon may prove very helpful to help you through withdrawal; because you most likely have to come off the pramipexole.

Helpful other links are these:

sleepreviewmag.com/2015/02/... and mayoclinicproceedings.org/a... The Johns Hopkins website has good info too: hopkinsmedicine.org/neurolo...

Arm yourself with info, use the forum to guide you further if needed, and discuss your current state AND the potential options with the neurologist next week to make a plan for you. Bring someone to support you, if you can (one of your children?!).

Hang in there and keep in touch. We know there is light at the end of the tunnel and you can get through. You are already dealing with the situation excellently, I think.

Take care.

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Banjo, I just noticed you already posted a year ago, also with the signs of augmentations. At that time, madlegs also gave very good advice.

What kept you with the pramipexole? The belief that you can not take opioids or other pain killers because of your work? As Jools said, the need to take them may be temporary. And if you afterwards still need them, in a low dose and/or in a combi with e.g. pregabalin, it may prove not to have te effect to are afraid off. If you worry about liability, your neurologist may help you with a statement (if that is the proper word. Jools, do you know anything about such ‘statement’?)

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Hi again. I tried several times since my last post to come off the premepixol. They have tried propugnal sorry i cant spell it. I have gone through hell and back since that last post and i think this is y im struggling as my head just cant take anymore. My two kidz dont need the worry, they have fantastic futures and they think im just tired. Even tho thry have come in my room a zillion times lol. I feel so much better already as i think all thiz haz led to mental health issues. I will take everyones advice and i need to get it sorted now. Thank you all as you have been wonderful

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Keep posting about your journey and never be afraid to ask for help. That’s what we are here for.

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Just a quick add - do not stop taking the Prami cold turkey you need to wean off very slowly bit by bit .You worry how you will react to Tramadol with your job but tbh i am more worried about you driving on little to no sleep .Take care x

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AGREE!

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First, what 'max dose'?

Second, have you had your ferritin levels checked? If your doctor was ignorant enough to get this far, then he is probably ignorant of the absolute necessity of keeping ferritin levels high.

If they have been checked, what are they?

You may need an IV infusion, 500 X2 ferric carboxymaltose over five days. That will help to turn things around. BID - Brain Iron Deficiency - is the most important thing to address. Without getting that right, nothing else will work well.

I was much as you are now, just not quite so bad. No sleep, compulsive behaviour, life down the tubes, no hope, suicidal.

Diabetes may muddle the picture, but you need a good, knowledgeable doctor who will help you to reduce pramipexole while supporting you with a strong opioid. I take methadone when things get rough. Methadone is a long-acting opioid that comes with little propensity for abuse, for us, and I have not noticed that it effects my ability to function during the day. It causes little or no euphoria, it is the only opioid with this characteristic.

As this is a crisis, I would ask to be put on sick-leave, and assisted through the process, closely, by a professional. One way or the other, you will get very little sleep, less than you are now, but with methadone the misery will be much the less.

But before anything else, get your ferritin levels high.

We are all here to help.

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Good luck Banjo1 x

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Banjo, I would think that the last person you need is a psychiatrist unless, for some odd reason, they are trained in this condition.

If your depression is profound, a neurologist versed in RLS will best know what to do to help you, along with all the other specialist knowledge of the condition. New knowledge is coming in all the time, you need someone up to scratch.

I hid from everybody because I was ashamed of my compulsive behaviour, for which I blamed myself entirely. When you are gobbling up your savings, and cannot stop, the psychic fallout is awful. I know.

I also hid because I could not do my job to my own standards.

I hid because I could barely get across the room,

When I was at my lowest, which was very low, I suddenly decided that I would get active on my own behalf. Each night when I was unable to sleep, I hunted down evidence-based information, I joined the Restless Legs Foundation.

I had been a victim of an out-of-date medical model, like you, and I got completely pissed off. I armed myself with knowledge. lots of it, as much as I could find. Then I printed it all out and put it into a neat folder - a heavy one - and plonked it in the middle of my doctor's desk.

I ceased to be a victim and became a warrior. That day I had my first iron infusion.

Try to take all that energy that is manifesting as misery and use it for positive action.

Get mad as hell.

The only way from where you are is up.

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So sorry to here of distress your suffering at present.

I too had to come of Pramiprozole its a horrible med i dont think it should be prescribed. I cant believe you've been onit for that many years i couldn't even complete 1 year with it.

It is woeful to get off i had prescribed sleeping tablest for the first 2 weeks then Diazipam for the next 2 weeks while cutting down on the Pramiprozole both of those 2 meds didn't really help much I'm a bad sleeper also but my RLS was out of hand too effecting my whole body as well its horendous.

I was even sorely tempted to take it one night as i just couldn't heck RLS/RLB decrease but i resisted with God's help as i had no will power of my own.

I then had Ampitripyline which I'd been prescribed for a different ailment AO. I started on a low dose and it really helped me to get of it.

And it does help with the RLS too so ive kept on it at 50mg at night it helps a bit with sleep too.

Don't know if you've got on top of it yet but you could ask your GP if you can be prescribed it.

I have tried quite a few meds bouggt some on net which were rubbish took Iron.. Melatonin..Cold Sprays Heat Sprays..Magnesium Spray..doc gave me Dioralyte because of the salts in it as i was on Quinine for years for leg cramps which was brilliant till it was taken off for some reason but all the others didnt help. Only this Ampitripyline.

Sorry to go on about me but i do empathise with you so much but there is hope and you will find it if you can take Ampitripyline give it a try but begin on a low dose as it can be a bit strong making you sleep need to start low as a higher dose will wipe you and put you off taking it.

May the Lord watch over you and send you peace.

Maureen

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Thank you soo much. I was put on amitriptyline years ago and it didnf helo. It works for my mam too. Diazapam was given to me once whilst i waz in as they didnt have premepixol in stock. The diazapam unfortunately for me didnt dk anything. Also morphine intravenous didnt neither. Because of my diabetes some medications block low sugar levels, this is also y my dr wont give me sleeping tablets. Im a nightmare without the RLS. But i will get the help i need and its theough this support on here. Thank u soo much

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Amitriptyline is poison to vast majority of us .It usually ramps RLS up to new hights AVOID 'X

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Im really sorry but i have to disagree about Ampitripyline its the only med that has helped me for 1 get off Pramiprozole and 2 has put a stop to my RLS/RLB fully i dont even need to take it everynight i take a 50mg approx twice a week and its enough to stop dead the dreaded RLS plus body restless also as Pramiprozole caused Augumentation horrible just kept getting worse everynight i had to get off it and was only with the help of Ampitripyline i did thanks be to God.

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I am glad that Amitriptyline has helped you but for the vast majority it worsens RLS.

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Pippins

That's why we're all made differently. What helps one person may just not help another.

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I am glad that it helped you, but you are the RARE exception to the "rule".. Tricyclics and SSRI's are tops on the list of DRUGS TO AVOID. There ARE always exceptions to everything, and I can promise you that you are in rare company, Lilmo. All the major researchers, books, The Mayo Clinic, Johns Hopkins (the biggest research hospital in the states) BOTH RLS Foundations in the US and the UK ALL list this as a med to avoid. It is an important piece of information when someone tells us they "suddenly" have RLS, and then we find out they started a new med, and as always, talk to your doctor.

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Thank u so much everyone. Ive had so many informative emails too. I dont drive if im tired and also if im unwell. This is why its affecting my buisness.

Im seeing a physcharitrist because i was on care assessment by the gp. The physcharitrist is the first dr i have seen who has taken RLS serious. He understands what the tablets have and are doing and he is the first dr to push for tests etc. After all my side egfects my head is battered and hence y i was put with the crisis team.

RLS and premepixole has completly ruined my life, pyhiscally and mentally

I am going to print a ll these messages oand emails out and give copies to my gp neurologist and physchatrist.

My plan of attack is to

Firstly get my iron levels checked, demand that my levels are raised to 30p. This has been proven to work

Get a food intolarance test done, again this is fred on the NHS in the uk. It has been proven by RLS sufferers improve if tbey have an intolarance to food and cut it out of thier diet

When i see the neurologist i am going to ask him what his knowledge is of RLS and if he does not give me the right amswers, i will allow him to do the tests but demand on a second opinion. I will travel to any hosp for this

Also i am goung to demand a medicine review. I am supposec to have one every 12 months. But nevef had one in my life

Then im going to demand an explanation of why my premepixole has nevef been monitored, why i was allowed to increase my dose, why after i have emailed and talked to drs about the side effects something wasnt done.

I want my treatment sorted first then i will make sure this wont happen to anyone else.

I have got my fight back so let the battle commence. Thank you all from the bottom of my heart. Ykou have all made so much of a difference and give me what drs should of done years ago

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If u care to message me saying where you live i will see if i know of any recommended Neurologists in your area x

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I truly don't know why its said that Ampitripyline makes RLS worse i really have to disagree on that. I promise you fully it has been a life saver for me and the only med that got me off augmentation from Pramiprozole. Like I've said before on here i don't need to take it everynight either i get 2 or 3 nights per week that i can go without taking it so i only need 50mg twice weekly.

I am living proof that it worked for me so i think it very unfair to class it as making it worse how can that be 100% right when im proof it's done the opposite for me. I cannot believe i am only in the 1% it helps. I tried many many other stuff and none of it worked at all. Magnesium, Melatonin, Freeze Sprays, Heat Sprays, tabs claiming to stop it, Compression Tights oh the list goes on and on so i truly hope you can understand my delight when Ampitripyline worked and how I'd want to share it.

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You are one of the RARE exceptions. You can read it on any reputable web site about RLS. We are not trying to argue, for me personally it is 28 years of experience. Feel lucky you are one who can take it.

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Hi. Im so sorry for the late reply. Im going to put an update in a reply shortly. That is so kind. I live north west england xxx

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Banjo Dr Kirstie Anderson at Newcastle Hospital may be your nearest RLS expert x

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Just a warning - care with the amitriptyline. While it works for a few, and great for those it does work for, it is on the list of drugs to avoid for RLS - it makes it significantly worse for most people.

Great that you’ve made a list. Well done - you have a plan. But you need to start to get off the drug with the help of an opiate ASAP!

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Also Pregabalin is a recommended drug, obviously it doesn’t suit everybody, but don’t let one persons experience put you off. I’m on it, I know many more are, and at present it works fine. Print the info off and take it to your neurologist and try and keep an open mind. Not every drug suits every person - you and your neurologist need to find what suits you.

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So glad to hear it!!!

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I will do a diary on this link so i hope i can help others while atm im being took seriously by drs

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Super Banjo

You sound much more positive and together praise God.

You do all you have listed on here it sounds the right way to go.

I know its only for the Ampitripyline i was enabled to get off Pramiprozole some meds out there shouldn't be prescribed such as Pregablin as in Lyrica but thats another story.

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Amitriprylene was given to me whilst trying to wean off Prami .The result was horriic -ended up in hospital to be knocked out after 72 hours of zero sleep .Avoid .Mums GP gave it my mum against my better judgement to help her sleep (she has dementia ) .She hadny had RLS in a few years .Result - i had to walk her around all night legs off the scale on just 10mg of Amittipyline AVOID X

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Pippins

I'm so sad to learn what has happened to you and your Mum on Ampitripyline obviously we all have different make up. I honestly cannot praise it enough i take 50mg twice a WEEK have tremendous results rid of RLS&Body totally gone. And taking it only twice weekly keeps it away. I must give a voice to it as there is no way only me it worked for...impossible.

See this proves that what helps one may not do the same for another...i was on Lyrica for a Neurological disorder i had and still do have. I was trying to reduce as it wasn't doing what i was taking it for but when i started weaning off it gave me anxiety awful bad too it was i actually had to up it again to control the anxiety something that i don't suffer from and i wasn't given it for anxiety in the first place. Took me months and months to get off it i would never try it again never but you see there are some it works for though i have heard it is hard to reduce snd I'm living proof it sure is.

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You will see that no one else is saying they can take it. 50 mgs of Amitriptyline would have me looking for the highest bridge to jump off, literally. Again, I am glad for you, BUT, it is a fact that 99.9% of RLSer's can NOT take this med. IT is easy to look up on a reputable web site for RLS. Search Amitriptyline in the search box, and you will see a ton of posts on it. :)

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It sounds like you have already made some very useful resolutions as to how to proceed now. I would say that you should prioritise coming off pramipexole now and you will probably need a few weeks off work to do this. I would second the advice to titrate down rather than discontinuing cold turkey. If you are not working then you can use an opioid to help with the withdrawal. Withdrawing from prampexole without an opioid is torture - very difficult to achieve. You can discontinue the opioid once you have washed the pramipexole out of your system (about two weeks from final discontinuation) and look for an alternative treatment. It may be that if you get your serum ferritin up this will suffice. It has done in some fortunate people. But even if raised iron levels is not sufficient you could try other drugs such as pregabalin. There is however no point in trying them until you are completely finished with pramipexole.

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I’m so sorry. Only those of us who also suffer can understand how you’re feeling. I’ve been having a really bad time in the last few weeks and as timing would have it I’ve just moved in with a most wonderful man. He’s so patient and tries to understand. I have an appointment with a new neurologist on Monday and have had to resort to some leftover oxy that my guy has available. So I slept the last two nights. Thank GAWD.

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Good luck on Monday! I really hope things improve for you!

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Hi Banjo, I agree with everything Jess said. The feeling you can get when you can offload to someone who's prepared to listen is a real relief, but I'd copy out what you've written here as it says a lot. I don't know if you're like me. When I see a doctor and I don't write things down I forget things and then kick myself for missing issues I wanted to discuss. I've had epilepsy for over 50 years and since I was a kid I've made a point of noting down issues to discuss. I may omit some but do cover most of the ones I want to find out about.

But if like Jess said you see a therapist, you may come up with other ones to thrash out.

Please let us know how you get on,

Lindy

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Hi Banjo1 Im new to this page Im so sorry your going through this mess as I read my heart breaks for you. I have been on Mirapex for 25 years or longer .I pray all the time I no one day I will be delivered from this mess. And I pray for all of you This horrible disease and medications are not suppose to be apart of our life. I can tell you that the research I have read sugar is a big factor and fried foods. I think I ready to try and jump on the ban wagon and give it a try. You have a blessed day .

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I don’t know whether welcome is the right word, but welcome!

What a nice post!

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Well another two meetings with the crisis team and they wont discharge me as yet

Im off to see the neurologist for a neurophysiology test today. Im arned with alot of informattion from everyone thank you. What drugs can be used lets see. I will keep u all posted but i know i wont have any answers but fungers ceossed and lets hope i do. Thank u all for tbe amazing support

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Good luck, Banjo!

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I had little electric put thro my arms and legs. My nervous system isnt a problem thro my diabetes but actual RLS. A report has been sent to another neurology so i will have to wait until i see them.

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Hello. Im sorry ive not been on for a while. Ive been and still unwell. Ive been in hospital and had a bit of a breakdown. Im still on the premipexole, still waiting for an app to see the follow up neurology. Im on the sick atm too. Everything seems to of halted. I have to a full mot but i cant just make an app at my gps i have to make a general app which is 2 weeks away, to get a gp to refer me for one, whuch is waste of an app time. No wonder there is a big waiting list. Ive never had one in my whole life so lets see what hapoens.

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Oh shoot, so sorry to hear this, Banjo! I am glad to hear that you are on sick leave (is that what you mean?), though. Less stress the better for you right now! What is a full mot? Good luck with your continued journey!

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Thsnk you. Yes on sick leave and a full mot in the uk is a term we use for a a complete medical check, bloods tests, review of medications etc to make sure everything is working together. Thanks again

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You’re welcome.😀 I’m so glad you’re getting a full mot done, as it seems like what you need right now!

I know it’s much easier said than done, but try and enjoy your time off.

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Visit to the doctors today. Had no sleep last night. No premepixol and i was determined but i had 3 roprinol. Going to ask for another sick note and try and get my mindset in a better place. The bills are mounting up as im self employed so no income apart from ESA but im determined to get PIP for my restless legs. Must admit all my ftiends are very understanding. Hopefully going awsy, all expenses covered, to a friends caravan. Plus i went away to my other friends caravsn last weekend in the lake district. Not alot support of family but my sis has been poorly my msms got severe mobilty problems. My daughter wss home last night as she is in the lake district at a friends wedding over the weekend. Shes a besutiful girl and in yr 5 medicine. Ha i hope she finds a cure for restless legs. So apart ftom not sleeping and standing walking kicking out and going up n down stairs all night, i feel mentally stronger than i did, so fingers crossed my journey on RLS might at long last stsrt getting some answers. I will let.you all kniw what the dr says as it.might help someone too. Thsnk you again to my RLS family

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Good luck!

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I am going through exactly what you right now in so many ways it is scary. Shrink visit this week. Suicidal in many ways over the past few weeks etc. etc. I feel your pain more than you can possibly imagine!!!

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Banjo,

Your story hits home very close to me as I am going through much of what you are right now but might be a bit ahead of you in all this. I wish I could tell you its gets easier but I am not there yet. I am off Pramipexole 100% thank God. I was taking about 1.5 mg when I got off and I had a serious compulsive behavior problem while on the Pramipexole. Gambling, eating, spending, you name it but "PRAM" messes with your pleasure center and my brain is still trying to get back to regulating on its own and it is causing me major problems. Bi-polar behavior, suicidal thoughts, a general sensation of being uncomfortable in my own skin. Like I just want to jump out of my body but in a different way than i experience during an RLS attack. You can't sit still and constantly feel the need to be moving around. I am currently taking 10mg daily of Methadone for my RLS but it also has side effects. I'm constantly cold and hot and have trouble regulating my body temperature. I have lost an appetite for food (which has it's positives in weight loss) which may seem like a good thing but really isn't a fun way to go through life when you feel hungry but food doesn't look or taste very good much of the time.

I currently am struggling with a bi-polar disorder that I feel is a direct result of being on Pramipexole and other anti anxiety/depression meds for years and now my body doesn't know how to regulate and produce the right amount of dopamine on it's own.

I have an appointment with my shrink on Thursday of this week to try and find a new medication to help me with my new bi-polar condition. The hits just keep on coming and at some point I am going to just bow out of this game and blow my brains out or something because I can't and more importantly I WON'T live like this! It's just not right and if death is the only thing that takes away my pain then I guess that is where I will end up sooner than I want to. :(

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Hi Diz, I trust you are aware of the knowledge that many/most antidepressant actually worsen RLS. Don’t know about anti-bipolar meds. Dr Buchfuhrer’s site rlshelp.org has a comprehensive list of these meds with elaborations on the treatment page.

Make sure your shrink is very aware that te bipolar may have been caused by the prami. I surmise that the treatment will be different from treating ‘ordinary’ bipolar. I do hope you get through, soon. Very soon.

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Hello everyone. Im so sad to hear that other people are having bad side effects from premepixol. Im sorry i have not been on here for a while as im still unwell.

FIRSTLY THOUGH, IF YOUR NOT AWARE OF THIS SCHEME TO REPORT SIDE EFFECTS OF THE MEDICATIONS (UK ONLY) PLEASE CHECK THIS LINK OUT.

yellowcard.mhra.gov.uk

Everything has come to a complete and utter standstill AGAIN for me. I am now sleepwalking and my friends caught me twice opening my front door, i made a coffee too which is worrying. I have fallen twice and the impact of my fall woke me up. Last time was 2 weeks ago and i have done some damage to my back. Im off to see my gp tommorow as i cant sit down properly without pain, not RLS but from the fall, which drs are saying its because im stressed and over tired. Y am i stressed and over tired, yes the premepexole.

I reported my side effects on the yellow card scheme. The original email i sent to my GP in oct 2016, yes an email as i was too embarrassed to go to them about the premepexole, i didnt get any help or support. Well since reporting the side effects to the yellow card, i have been diagnoised with adverse reactions to premepexole. And guess what, i get called in for a review. Yes 10 years after tstarting them, 2 years since i emailed the drs.

I went for the review as im still on 5 x .18mg premipexole. The gp went thro all the alternatives and suggestrd i went to taking just 3. I laughed at him and said and what are u going to give me to help me. The gp went quiet and said mmm nothing. I nearly started crying and said you cant do that to me, do u understand what i am going through. Ten mins later the conclusion was the gp handing me a perscription with. Wait for it, 5 x 0.18mg daily. I asked wen i would see the neurologist, yes im still waiting, his reply was they are very short staffed so i will have a long wait. END OF REVIEW. I couldnt believe it.

I left the surgery thinking what i should do next. I rhought my pharmacist knows me well, he prop has a better idea on drugs etc then the gp. So i went to see him.

I told my pharmacist everything and he agreed that i wss very complex case esp with my diabetes. He said in his opinion but its not his place to recommend any other treatment etc but i shud be in hosp getting observef 24/7 while i come off them. He said u cant jusr stop taking them. He said there are alternatives that can be used. He told me i need to get put back onto the crisis team as things speed up if they are involved.

Personally im too scared to do this. My two beautiful adult children dont live at home as one is at uni.in her last year of meficine 350 miles away n tje other is on his first tour in the navy. I have pushrf alot of my family/friends awsy as i dont think they understand what im going through. So basically im.on.my own, my ex is still.my ex as he dosent understand so its frightening not knowing what to do.

Ive been twice also to A N E to say i dont feel safe. Thoughts running through my head.

Im just getting no where and starting to feel that im becoming a pain to everyone. Drs taking no notice and i feel my life is just going down the pan.

Please fill in the yellow card scheme to get these side effects put on the leaflets. We are stuck on them atm but lets stol over people being perscribed them a little more research must be done

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Hi Banjo!

I’m glad you’re back, but so so sorry that you’re in a bad place again.

Are you writing all this down and showing it to your doctor? I think that this is what you need to do to try and get through to them. What did the A E do when you reported not feeling safe? Probably nothing since you’re writing from home (right?). If so, shame on them. If you don’t feel safe you need to be put in a hospital where you can be monitored 24/7. Is there anyone staying with you at the moment?

It is EXTREMELY neglectful of your doctor to give you a prescription for something that he knows you have an adverse reaction to. Is there a chance of getting another doctor?

I agree that you need to be put back on the crisis team. How do you go about doing that?

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Banjo?? You still there?? Can you give me a quick note so I know you’re okay?

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